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Nov 24, 2017
Post Polio Litaff, Association A.C _APPLAC Mexico
Polio, postpolio, vacunas, erradicación, Syndrome Post Polio Définitions et caractéristiques
Martha Lillard spends half of every day with her body encapsulated in a half-century old machine that forces her to breathe. Only her head sticks out of the end of the antique iron lung. On the other side, a motorized lever pulls the leather bellows, creating negative pressure that induces her lungs to suck in air.
In 2013, the Post-Polio Health International (PHI) organizations estimated that there were six to eight iron lung users in the United States. Now, PHI executive director Brian Tiburzi says he doesn’t know anyone alive still using the negative-pressure ventilators. This fall, I met three polio survivors who depend on iron lungs. They are among the last few, possibly the last three.
Their locations form a line that cuts directly through the heart of the country—one in Dallas, one outside Oklahoma City, and one in Kansas City, Missouri—what some call tornado alley.
The human battery
Storms have always been especially difficult for Lillard because if the iron lung loses power, she could die in her sleep. She lives alone, aside from three dogs and 20 geckos that she keeps in plastic terrariums filled with foliage and wool. “They like to sleep in the fleece, wrapped up like a burrito,” she said as she introduced me to a few of her favorites.
Her iron lung has portholes and windows on the side; a pressure gauge at the top. The machine is actually cobbled together from two iron lungs. One, the March of Dimes gave her when she was a child. The other, she bought from someone in Utah, after she haggled him down from $25,000 to $8,000. The body has also been modified over the years. Her grandfather invented a motorized pulley system that closes the bed tray into the tank after she climbs in. He also replaced the brushed aluminum mirror above the neck slot with a real mirror so that she could have a clear view to the rest of the room when she’s locked in the canister. A local engineer used a motor from an old voter registration device to build a mechanism that tightens the collar around her neck after she slips her head through the portal. The fan belts and half-horsepower motor have been replaced about ten times.
When Lillard is outside of the tank, she can breathe using a positive-pressure ventilator, a smaller device that pushes air into her lungs. But that instrument doesn’t provide the same relief as when she puts her entire body into the 640-pound, 7-and-a-half-foot-long apparatus. Plus forcing air into the lungs can cause inflammation or damage the air sacs. When she’s sick, she can only heal if she spends full days in the iron lung. She calls herself “a human battery” because she has to recharge every day.
She was infected with polio at her 5th birthday party at the Joyland Amusement Park on June 8th, 1953. Nine days later, her neck ached so bad she couldn’t raise her head off the pillow. Her parents said it was probably just a summer cold, but Lillard could tell they were afraid. They took her in for a spinal tap, which confirmed it was polio.
Lillard asked me to take out a photo album so she could show me snapshots of her youth as she sat on a blanket on the floor of her living room, where it’s more comfortable for her to sit when she’s out of the machine. “I wanted to be a ballerina. That was my big wish. I started walking on my toes when I was one, and I just constantly was after ballerina dolls. We didn’t have a dance school in town until I was five and my mom was going to enroll me that year, but I got sick,” she told me. “I think now of my life as a ballet. I have to balance so many things. It’s a phenomenal amount of energy I have to use to coordinate everything in my life.”
Polio is a silver bullet
“All the mothers were just terrified because people were just getting it right and left,” Lillard said. “They didn’t know if it was a virus or bacteria or how you caught it.”Poliomyelitis is a highly contagious disease that can cause paralysis of legs, arms, and respiratory muscles. “The polio virus is a silver bullet designed to kill specific parts of the brain,” Richard Bruno, a clinical psychophysiologist, and director of the International Centre for Polio Education said. “But parents today have no idea what polio was like, so it’s hard to convince somebody that lives are at risk if they don’t vaccinate.”
When Lillard was a child, polio was every parent’s worst nightmare. The worst polio outbreak year in US history took place in 1952, a year before Lillard was infected. There were about 58,000 reported cases. Out of all the cases, 21,269 were paralyzed and 3,145 died. “They closed theaters, swimming pools, families would keep their kids away from other kids because of the fear of transmission,” Bruno said.
Children under the age of five are especially susceptible. In the 1940s and 1950s, hospitals across the country were filled with rows of iron lungs that kept victims alive. Lillard recalls being in rooms packed with metal tubes—especially when there were storms and all the men, women, adults, and children would be moved to the same room so nurses could manually operate the iron lungs if the power went out. “The period of time that it took the nurse to get out of the chair, it seemed like forever because you weren’t breathing,” Lillard said. “You just laid there and you could feel your heart beating and it was just terrifying. The only noise that you can make when you can’t breathe is clicking your tongue. And that whole dark room just sounded like a big room full of chickens just cluck-cluck-clucking. All the nurses were saying, ‘Just a second, you’ll be breathing in just a second.’”
In 1955, Americans finally had access to the polio vaccine developed by Jonas Salk. “It was hailed as a medical miracle and the excitement about it was really unparalleled as far as health history in the United States,” Jay Wenger, director of the Bill & Melinda Gates Foundation’s polio-eradication effort told me. “No one who remembers the 1950s, in terms of polio, wants to go back there and be in that situation again.”
According to Bruno, if an infected person in either of those countries visited family in an area like Orange County, California, where many parents are opting out of vaccinating their children, “then we could be talking about the definition of a polio epidemic.”
Wenger said that’s why the Gates Foundation recently joined the other organizations in the global effort to eradicate polio. “If there’s a virus anywhere in the world, it could just come back in,” Wenger said. “Some little kid could get on a plane and fly in and reinfect an area. And if the kids in that area are not vaccinated, you could start the virus circulating again.”
But even though the last wild case of polio in the US was in 1979, it still haunts this country. “A lot of people think of polio as a disease of the past and don’t realize there are people here today that are still suffering the effects of polio.” said Brian Tiburzi, executive director of Post-Polio Health International (PHI), an advocacy group for the estimated 350,000 to 500,000 polio survivors living in the US.
Some polio survivors were only partially impaired or got better. For instance, Mia Farrow only had to spend eight months in an iron lung when she was nine, before going on to become a famous actress and polio advocate. And golfer Jack Nicklaus had symptoms for two weeks as a child, but as an adult only had sore joints.
Let it breathe for you
Lillard offered to let me try out her iron lung about an hour after I met her. She showed me how to operate the ad hoc mechanisms that would lock me into the tank and tighten the collar around my neck like a camera shutter—tight enough that no air can escape, but loose enough that I don’t choke myself.
I climbed into the bed tray, slipped my head through the hole, tightened the collar, then flipped the switch that controls the pulley that closes the tray into the main canister. As the system locked me in, I had a quick wave of claustrophobic panic and my instinct was to take deep breaths, but a motor was controlling that. I tried to describe the feeling to Lillard, but the machine was inhaling for me, so no sound came out. I had to wait a moment for the release.“Let the air out of your lungs and let it breathe for you,” Lillard said. “Imagine if you were real tired of breathing, how good that would feel—if you were struggling to take a breath.”Being in an iron lung was the most relief and discomfort I have ever felt at the same time. I slowly got used to the mechanical rhythm and began feeling a little relaxed. I tried closing my mouth, and air still rushed in through my lips. I felt like a vacuum cleaner.
As I climbed out, Lillard warned me to be careful and not break any of the switches or pulleys. If I damaged anything, and she wasn’t able to get someone to repair it within a few hours, she might not have made it through the night. A few weeks earlier, the collar-opener broke and she was trapped inside. Fortunately, her housekeeper was there to help her force it open, and a friend who does custom metal fabrication for motorcycles, planes, and other machines, Tony Baustert, came a few hours later to repair it.
Recently, an ice storm knocked her power out for three days and the generator malfunctioned. The fire department came over but they wouldn’t run a power line from down the street or provide a temporary generator, Lillard said. Fortunately, one of the firefighters came by when he was off-duty and fixed the generator. During the panic, Lillard thought about Dianne Odell, a polio survivor who died in her iron lung in Memphis in 2008, after she lost power during a storm. Her father and brother-in-law took turns pumping the bellows by hand but couldn’t sustain the rhythm long enough to keep her alive.
Understandably, Lillard lives in a constant state of anxiety over the functionality of her iron lung. But she said the company responsible for servicing the device, Philips Respironics, hasn’t been much help. She recalls one time when a repair person disassembled the machine to make a repair, then tried to leave before putting it back together. Another technician took it apart and couldn’t figure out how to fix it, so Lillard had to call another mechanically skilled friend, Jerry House, to help.
These days her biggest concern is the canvas spiral collar that creates the seal around her neck. She used to have to replace them every few months after they wore out and stopped keeping a seal. Back then she could get them for a few dollars each, but she recently bought two from Respironics for a little more than $200 each. She said the company wouldn’t sell her any more because they only have ten left. For years she’s been trying to find someone to make a new collar. She uses Scotch guard on her current supply and tries not to move her neck around, hoping to make them last as long as possible.
Iron lungs became the responsibility of Philips through mergers and acquisitions. The March of Dimes supplied and serviced iron lungs until the end of the ‘60s, around the same time the J.H. Emerson company stopped manufacturing the product. Once Salk’s vaccine diminished the need for polio support and advocacy, March of Dimes handed off iron lung responsibilities to Lifecare Services. Medical supply company Respironics acquired Lifecare in 1996, then merged with Philips in 2007.
Over the years, Lifecare and Respironics have tried to get more polio survivors to use alternative breathing aids—devices that were newer, cheaper, easier to service, and didn’t require parts that were no longer manufactured. In 2004, Respironics gave iron lung users three options: transition to another ventilator device, keep using the iron lung but know that Respironics may not be able to repair the device, or accept full ownership and responsibility of the iron lung and find someone else to repair it. According to Post-Polio Health International, responses “ranged from ‘it is understandable that repairing a device made that long ago would be difficult’ to ‘a multi-million dollar company should be able to just make parts.’”
Philips Respironics denied multiple requests to comment for this story. But polio advocates believe the company can do more to help polio survivors who have struggled with the effects of polio their entire lives.
“It would be helpful if the people who are contractually responsible and morally and ethically responsible for polio survivors did something to help these people,” said International Centre for Polio Education director Richard Bruno. “It would be like if you bought a used car, you drove it a block and the car stopped working. Then you go back to the car dealer and you say, ‘Hey, the car stopped working.’ And they say, ‘Well too bad, you bought it and that’s the way life goes.’ Except instead of a car it’s a machine that you need to live.”
The iron lung’s a part of me
Like Lillard, Paul Alexander, 70, also relies on a mechanic to keep his iron lung running.
I met Alexander a few times in his small house in Dallas. He spends nearly every moment in his iron lung in the center of his living room, which is decorated with degrees, awards, pictures of family, and a drawing of the Scottish folk singer Donovan, who had polio. When people enter the front door a few feet away from him, he usually greets them with a warm upside-down smile, reflected in the mirror above his head.
Alexander, who got polio in 1952 when he was 6, is almost entirely paralyzed below the neck but that hasn’t stopped him from going to law school and becoming a trial lawyer. “When I transferred to University of Texas, they were horrified to think that I was going to bring my iron lung down, but I did, and I put it in the dorm, and I lived in the dorm with my iron lung,” he told me. “I had a thousand friends before it was over with, who all wanted to find out what’s that guy downstairs with a head sticking out of a machine doing here?”
Alexander hasn’t been to a trial in a few years now as it has become nearly impossible for him to get out of the iron lung for a few hours like he used to do when he went to court and represented clients in a wheel chair.
In 2015, a friend of Alexander uploaded a YouTube video of Alexander explaining the issues he was having with his iron lung, hoping it would be seen by a machinist who knew how to repair the respirator. Finally someone connected Alexander with someone kind and skilled enough to help. “I looked for years to find someone who knew how to work on iron lungs,” Alexander said. “Brady Richards, it’s a miracle that I found him.”
Alexander had been in the refurbished model for about a couple months when I first met with him in September. To him, it was like a new skin. “Once you live in an iron lung forever, it seems like, it becomes such a part of your mentality. Like if somebody touches the iron lung—touches it—I can feel that. I can feel the vibration go through the iron lung,” he said. “If there’s a slight bit of a vibration that occurs as the result of the mechanics—worn out the fan belt or it needs grease or anything like that—it tends to change the breath slightly. Yep, the iron lung’s a part of me, I’m afraid.”
My worst thought
My final visit was Mona Randolph, 81, who lives with her husband Mark, 63, in Kansas City, Missouri. When I first arrived, a helper was tucking Mona into the machine for the night. They lift Mona into the iron lung using a mechanical arm attached to their ceiling since Mark’s back problems prevent him from lifting her into the iron lung, like he used to do when they first met in the ‘80s.
Mona got polio at the age of 20 in 1956. At the time, she was a skilled pianist planning her wedding. She needed an iron lung for the first year, until she went to rehab in Warm Spring, Georgia, where she was able to wean herself off. But 20 years later, in 1977, she had a series of bronchial infections—possibly due to post-polio syndrome—and her doctors told her she needed to start using an iron lung again. “The ‘yellow submarine’ is my necessary, trusted, mechanical friend,” she told me. “I approach it with relief in store at night and thankfully leave it with relief in the morning.”
When I met with the Randolphs, Mark gave me photocopies of old service manuals and operating instructions. He filled me in on little-known history about the Emerson iron lung and its inventor, whom they met at a Post-Polio convention. I realized what each of these iron lung users have in common are the aid of generous, mechanically skilled friends and family. And that’s probably the main reason they’ve been able to live long and full lives, despite the hardships and anxieties of depending on aging machinery to survive.
But another thing they all had in common is a desire for the next generations to know about them so we’ll realize how fortunate we are to have vaccines. “When children inquire what happened to me, I tell them the nerve wires that tell my muscles what to do were damaged by a virus,” Mona said. “And ask them if they have had their vaccine to prevent this. No one has ever argued with me.”
Alexander told me that if he had kids he would have made sure they were vaccinated. “Now, my worst thought is that polio’s come back,” he said. “If there’s so many people who’ve not been—children, especially—have not been vaccinated... I don’t even want to think about it.”
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